Thursday, December 19, 2013

confusion, tests, and mysteries

Today I feel like I've been in an airport waiting for a flight, only to have the flight delayed again and again (the flight is her diagnosis and treatment). Fiona is a mystery. There are many things that she could be diagnosed with, but there is also something that doesn't fit. When we get test results back they are sometimes confusing, most of the time we think we understand what they are testing, but we don't.

What we know is that her t-cells are low, her b cells are low, she is loosing protein somewhere during digestion, her t-cell function isn't good, and she isn't sick. We always come back to why isn't she sick? When they say she should be sick, they mean hospitalized, on her deathbed sick, not just a cold. In spite of replacing her IGG she still has an extremely compromised immune system.

They are sending off more genetic tests. One of them is only done by one person in the entire world, and it often gives an answer when no other answer can be found. Again, they drew as much blood as they could from Fiona.

Sometime in January, possibly the 8th they will scope her stomach and do a colonoscopy. The gastroenterologist wants to rule out celiac disease. Looking from the top and from the bottom of her GI tract leaves about 10 feet in the middle that they won't see. They may have her swallow a capsule camera to look at the rest.

We've been told to keep her away from crowds, and to mask her when she leaves the house. Have you ever tried to get a 2 year old to wear a mask? It's not her favorite thing. I think that in time she will get used to it.

One of the things we learned yesterday is that a specific t-cell function test called pha is the best indicator of how well her t-cells are working. In August her number was 203,250. Last month it dropped to 17,563. Normal range is above 135,190.

There is more to write, but naptime is almost over. More tomorrow!

Fiona's fundraiser

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